CHALLENGES
OF BIOETHICS
Paris,
October 22 (No.2001-111) -
Is everything that is technically possible ethically acceptable? This question,
raised by a great many scientific discoveries, is more pressing than ever in
view of humanity’s newly acquired ability to influence the very process of
life and its capacity to impact the future of its own species, as well as of
other species. This leads to a wide range of questions regarding not only human
cloning but also the use of transgenic technology in agriculture for the
production of genetically modified organisms (GMO), and genetic engineering in
stockbreeding.
Science ministers from around the world will for the first time examine
sensitive questions linked to genetics as well as others issues of longstanding
concern (i.e. palliative medicine, care for the terminally ill, prenatal
diagnosis, organ donation, medically assisted procreation etc.). The ministers,
some 50 of whom have already confirmed they will be attending, will discuss
these subjects at a round table, Bioethics:
International Implications, on October 22 and 23 at UNESCO Headquarters.
The roundtable, convened by UNESCO Director General Koïchiro Matsuura,
takes place within the framework of the 31st session of the General Conference.
It is divided into four parts: basic concepts and principles of bioethics;
current issues in bioethics; institutional and regulatory norms and systems: the
rationale for a universal text on bioethics; and consciousness-raising,
information, education and public debate.
In the early 1970s, thinking about bioethics essentially focused on
medically assisted procreation, but today the ethics of life cover a very wide
field including, principally, genetic data, embryo and stem cells research, as
well as pre-implantation diagnosis, the donation of organs, participation of
human subjects in experimentation protocols, genetically modified organisms and
end-of-life care.
Research on embryonic stem cells
is certainly one of the most controversial issues today. Such research should in
the future make it possible to create organs and tissue, of which there is
currently a severe shortage, for transplantation purposes. Spectacular progress
is expected in the dealing with diseases which are currently either difficult or
impossible to treat (such as Parkinson's, Alzheimer's, multiple sclerosis etc.).
But the fact that these stem cells mainly come from human embryos, raises the
question of whether we should create embryos for sole the purpose of
facilitating research. Yet, unless we do, we may only dispose of embryonic stem
cells taken from embryos no longer destined for the purpose of procreation (for
example, embryos frozen after in vitro fertilisation). Other questions remain,
notably, how to gauge whether the research itself is acceptable and how to
guarantee that the rights of the donor parents are respected?
Opinions on the subject of embryonic stem cells differ widely. As the
Report of UNESCO’s International Bioethics Committee (IBC),
The Use of Embryonic Stem Cells in Therapeutic Research (*), makes clear:
“The ethical legitimacy of performing human embryonic stem
cell research
depends, in large
measure, on the status which
is attributed to the embryo.”
The report considers three principal positions thought to be ethically
defensible: “a) the […] use of human embryos for deriving embryonic stem
cells is intrinsically unethical, b) […] such use is ethically acceptable for
certain medical purposes and subject to rigorous safeguards, and c) […] taking
into account the present risks linked with this research and its possible
ethical drifts (notably the risks of instrumentalization of the embryo),
embryonic stem cell research should not be allowed.”
The prospect of human cloning is also sparking intense debate. Some still warn that
cloning for reproductive purposes will be conducted, despite the fact that it
has been banned both by UNESCO's Universal Declaration on the Human Genome and
Human Rights (1997),* which qualifies cloning as contrary to human dignity (Art.
11), and by legislation in many countries. Although the international community
has already rejected human cloning for reproductive purposes as an unacceptable
instrumentalization of the human being, questions remain regarding therapeutic
cloning. Is it acceptable in as far as it may make it possible to treat
incurable and disabling diseases? Does accepting human cloning for therapeutic
purposes (and therefore the development of the necessary techniques) imply
running the risk of making reproductive human cloning possible? In any event,
the issue of the embryo remains, seen that so-called therapeutic cloning
consists of creating - by transferring the nucleus - an embryo for the sole
purpose of obtaining stem cells.
Other, less frequently raised, questions are just as important from an
ethical standpoint. Diagnosis, which is at the very heart of medical practice,
is one of these questions. Bioethics has already had to tackle prenatal
diagnosis and address the question of how to prevent the use of pre-natal
diagnosis not only for legitimate medical purposes but for so-called “foetus
sexing” (the identification of the foetus's gender in order to eliminate
female foetuses). With the progress of genetics, a new type of diagnosis, which
also presents a threat, has come to light: pre-implantation
genetic diagnosis. Such diagnosis - currently restricted for the detection
of serious diseases – may yet be used for eugenics, in other words, for the
selection of individuals. It may become very tempting to use this diagnosis
technique for enhancement purposes or to select certain physical
characteristics.
The status of the human genome is at the heart of another major question:
who owns genetic information? The
person who has donated part of his or her genetic material? The researcher who
has found an application for a discovery? The company that paid for the
research? In principle, only real, useful inventions, or inventions likely to
have industrial applications, can be patented. Nevertheless, there has been a
rise in the number of requests for patents linked to the human genome and its
applications, including gene sequences, whose future applications remain
uncertain.
Because of the explosion in the number of patents “the costs of future
therapies and genetic tests will become prohibitive for most human beings and
nations,” as underlined in the draft report on the follow-up to the
International Symposium on Ethics, Intellectual Property and Genomics (*). Should these
“discoveries” be protected, depriving some people of their potential
benefits? Or should intellectual property protection in this area be reduced, at
the risk of deterring
corporate investment because of diminishing profitability? Although discoveries
in genetics compound this problem, it is not a new one, as can be seen from the
debate regarding the cost of AIDS drugs, which are protected by patents and
therefore too expensive for some countries.
The collection, treatment, storage
and use of genetic data raise a host of ethical questions. UNESCO is
considering an international instrument on genetic data and the IBC - which has
published a report (*) on genetic data - has examined several of its aspects:
the aim of the collection; informing sample donors; free and informed consent on
the part of donors; regard for the particular sensitivities of particular
social, religious and ethnic groups regarding human tissue; precautions which
must be taken when conducting genetic tests (such as parentage testing)
considering their implications for the people tested and others; the
confidentiality; and fate of the samples.
Here too, the progress of genetics entails potential dangers. For
example, the systematic compilation of files containing genetic data about
individuals could open the door to many new types of discrimination, not least,
discrimination against individuals shown to have a genetic anomaly signalling
disease or the risk of developing a disease. People could be barred from jobs by
employers wishing to prevent the development of occupational diseases among
their employees. They may also be refused, or charged more for, insurance. Some
people may even be blacklisted by credit organizations. There is also a risk of
other types of discrimination where the findings of a genetic survey conducted
on a given population may lead to the stigmatization of entire groups.
Population genetics provide many examples of the complex issues bioethics
must address. The study of genetic variations in populations, makes it possible
to identify migrations or trace the spread of diseases. But here too we find
some ethical issues already raised earlier. Populations being studied must give
their consent, their informed consent. However, does the notion of individual
consent, prevalent in western societies, mean anything among indigenous
communities, for example? In which language should the explanation required to
obtain informed consent be given? And if research bears fruit, in the form of
patents, without benefiting the community that donated the sample, would this
not be tantamount to so-called “biopiracy”.
In fact, some of the problems concerning genetic data, such as
confidentiality and consent, can already be found - sometimes under different
names – in conventional medical practice. As far as human
organ and tissue donations are concerned, we can observe that the field of
bioethics is expanding. This field has been facing major questions for some
time. Notably: How to avoid the emergence of trafficking in human organs - such
as kidneys, liver and pancreas - or of human tissue - cornea or bone marrow etc.
- for which there is a strong demand. Genetics now raise new questions, about,
notably, the use of
xenotransplantation
(the transplantation of genetically engineered animal organs into a
human body) and genetic engineering in stockbreeding as a potential source of
organs which are compatible with the human body.
The donations of human organs and tissues brings us back to the question
already raised about patents. Even if the current imbalance between organ supply
and demand were to be corrected, this success would come at a cost - an
especially heavy one for the countries of the South - and there is no reason to
believe that some sort of equity will be found among those in need of organs and
tissue. Here we face the more general, ethical problem of solidarity.
If the human genome is, according to the first article of the Universal
Declaration on the Human Genome and Human Rights, the “heritage of
humanity”, should not the benefits of research - mainly conducted in
industrialized countries, often using material from other countries - be better
shared? The IBC has proposed creating a mechanism or international fund which
would use some of the profits private and public companies earn from human
genome data to finance technology transfer.
The life sciences are constantly adding to these already numerous and
often intertwined ethical quandaries. The applications of genetic research,
those already available and those yet to come, are having and will have a strong
impact on health, the economy (agriculture, the food trade, stockbreeding and
industry), social life (insurance, education, employment, social security) and
also on private life, on relations between generations etc. This is why UNESCO
has chosen the Ethics of Science and
Technology as one of its five major priorities in its Medium-Term Strategy
for 2002-2007.
****
(*) The
reports can be found at: http://www.unesco.org/ibc/en/reports/DraftRep_UseOf_GenData_E.pdf
http://www.unesco.org/ibc/en/reports/DraftRep_IntSymp_Eth-PropInt-Gen_E.pdf
http://www.unesco.org/ibc/en/reports/embryonic_ibc_report.pdf
http://www.unesco.org/ibc/en/reports/solidarity_en.pdf
The
full text of the Universal Declaration on the Human Genome and Human Rights: http://www.unesco.org/human_rights/hrbc.htm